Allie Rose turned 8 this past weekend.  For the first time in ages, I started thinking about how afraid I was to have another baby before she was born.  We waited over 5 and a half years.  During that time, we watched Shelby be ventilated twice after having stopped breathing.  We saw countless doctors, therapists and other specialists.  She underwent surgery.  We put her on a very strict, labor intensive diet.  We worried through black eyes and knocked out teeth due to falls during seizures.  We cried, we prayed, and we slept in more hospital beds than I care to remember.  We watched her fall behind developmentally and academically.  My heart had been broken into a million pieces and I wasn’t sure I had enough heart left to give to another child.  I always wanted 3 children.  I married a man with a son and I’ve been with Chuck since Chandler was six.  So I count Chan as my first child.  Then I gave birth to this precious, special, medically fragile child.  Two children started to feel like more than enough.  I was terrified.  Scared of having another child as demanding as Shelby.  Afraid I couldn’t handle it.  But I couldn’t ignore the ache I felt to have another child.  God placed that desire in my heart – and named her Allison Rose.  The truth is, I couldn’t have handled another child like Shelby.  In fact, I can’t handle Shelby!  But God can.  He has given me everything I have needed and sustained me every step of our journey into Dravet Syndrome.  And He would do it all again if He chose to give me another sick child.  The fact of the matter is that God can take care of anything that comes into my life – if I let Him.  This is the truth I had to come to.  This is the belief that allows me to put one foot in front of the other every day.  When I get out of His way, He is able.  And because He is able, I don’t have to live in fear of what will happen to Shelby.  God is in control.  Life is scary at times, but whatever happens, He will take care of me.  I am so grateful for this peace.  Without it, I would have missed out on so many blessings – especially Allie Rose.

“There is no fear in love; but perfect love casts out fear…”  1 John 4:18

Originally published on Feb 26, 2013

I LOVE to read.  I have a handful of things I want to read RIGHT NOW.  And I don’t have the time to get to them all in the immediate future.  And sometimes it physically hurts me.  What you see in the picture is 69 pages of material that I have to MAKE myself read.  Honestly, it’s not very interesting or inspiring.  It can be enlightening – but not always in a good way.  These 69 pages comprise Shelby’s IEP.  That stands for Individualized Education Plan.  This is Shelby’s school plan for the next calendar year.  It details what she will be taught, what her goals are and how and when those goals will be measured.  69 pages to teach someone on a two-year-old level.  I find this both ridiculous and reassuring.  It is a ridicuous amount of “legal-speak”.  It is a ridiculous amount of work for the hard-working, caring people who spend their lives helping Shelby and others like her.  And it is a ridiculous amount of paper.  It is reassuring to me that I live in a country and in a state that requires this much documentation to assure that my daughter gets what she needs from our education system.  It is reassuring to me that well-meaning teachers and aides have a plan to follow.  It is reassuring to me to know that her teachers want the very best for her and are willing to work at making that happen.  And as work through Ann Voskamp’s book One Thousand Gifts, (yes, I’m a little behind the trend) I can even find gratitude in an IEP.  Voskamp says, “…every moment is a message from The Word – God who can’t stop writing His heart.”  What has God written in the pages of this IEP?  The most important thing I see is His love for Shelby and His care for me.  So pardon me while I simultaneously role my eyes and smile.  “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”  Romans 8:28 

And for those special needs parents who have yet to find thankfulness in the ARD/IEP process, how about a giggle instead.  http://www.mostlytruestuff.com/2012/11/ways-to-make-your-next-iep-awesome.html

Originally published on Feb. 19, 2013